I need advice… and an update.

Living On Oxygen for Life

I’m alive!!! I know… It’s been since November 2018 that I’ve written on my blog. There’s huge reason for that. We all know that the holidays are difficult being that it’s stressful and cold, not to mention, it’s also flu season. So, I stayed indoors a lot. K got me a PUPPY! I love her but she is super energetic and wore me out for the first month. Who am I kidding… she still wears me out but it’s not as bad as it was when we brought her home. FYI: She gets car sick. UGH! For those of you who follow me on Facebook or Instagram know most of this. In fact, if you don’t follow (which is totally ok!), I have a section down on the bottom of the right column of my blog that shows my Facebook and Instagram feed! Yay how convenient, right? No need to have the app!

I also ended up in the hospital in January due to severe shortness of breath and inflammation of my lungs and the doctors couldn’t figure out what caused it. That is so frustrating, am I right? I’m sure you can see me rolling my eyes. haha! When I got home from the hospital, I felt good but a week later, I started feeling worse than when I went into the hospital. You can imagine how nervous and scared I became. Don’t worry though. I put my thinking cap on as well as had a CT Scan with Contrast and a Echocardiogram that showed NO PULMONARY EMBOLISM (Yay!) but it did show that my Left Ventricle Ejection Fraction (LVEF) was 35%. Normal is 55% – 70%. That means my left ventricle (bottom left chamber of my heart) is have a hard time pumping out oxygenated blood to my body. YIKES!

I noticed with my SOB, since my doctor increased my Thyroid medicine, Syntroid, back in November, my breathing became much worse over the course of 2 months time. So, without telling my doctor after I started getting worse again in February, I split the pill in half. I do NOT recommend doing medicine adjustments without discussing it with your doctor. I plan on telling him. Within a weeks time, I started breathing better. K and I started becoming optimistic about my future again. My cardiologist started my on Entresto. He sent my home with samples and asked me to ask my Pulmonary Hypertension doctor to check into any possible interactions it might have with Tracleer/bosentan because he’s not super familiar with Tracleer. It took my PH doctor nearly a week but she gave me the green light to start taking it. I’ve been on it for a week and a half and I think it is causing a moderately annoying side affect of itching on my head, face, shoulders and the back of my neck. So, now I need to call my cardiologist about that. *sigh*

But all of this is NOT what I need advice on. Sorry! I’m getting to it. *grin*

Last Tuesday, I received a phone call from my DME company, Lincare, who services my LIQUID OXYGEN. They told me, as of April 1, 2019, they are stopping all liquid oxygen service. I freaked, even though I was warned by one of my wonderful blog readers, Cindy. Thank you so much Cindy! Lincare gave me the names of 4 companies in my area who still service Liquid Oxygen. One of which I’ve used before years ago and one of them is a Nationwide company called Apria.

What I need help with is: Can any of my readers, who have had experience with Apria, tell me your thoughts of this company. If you have an opinion, please don’t just say that you like them or don’t like them… Please tell me why in the comment section. This could potentially help so many people who use Lincare for their liquid oxygen and have high flow oxygen use that won’t typically benefit well from switching to e-tanks for portability purposes.

To go on vacations, we loved Lincare because they also are a Nationwide company who arranged refilling my liquid oxygen reservoirs at our vacation destinations as long as they had a shop there. Selecting a local company for my future liquid service would definitely make it difficult for any future road trips which is crushing to K. Ok, me too but K REALLY loves the beach!

So, if you can help me with your opinion of Apria, I’d really appreciate it. Thank you so much! *HUGS*

When you least expect it…

Living On Oxygen for Life

Sometimes life throws us a curve ball and how we react to that can really show us how much of a team we are. We’re not just married and love each other; we are all-in through thick and thin with all the rollercoasters and good times that make up our life.

Throughout this year, K has been telling me that he really, really needs a vacation on a beach. He’s experienced an emergency visit to an ER clinic for himself at which time I had to bail on him because I developed a MASSIVE migraine while waiting in the patient room with him. Thank goodness his sister came to our rescue so that I could go home leaving him there alone until she got there. (I felt so guilty!) He’s had to deal with working in 100+ degrees heat over the summer. There’s also been my up and down health with the fact that I could no longer do the chores around the house that I used to do, which meant that K had to do them. That’s not all of it but you get the gist, right? So, yeah, he really needed a beach vacation.

I told K that, with the way our budget looked, we were going to have to get creative about being able to afford going on vacation. I knew he really needed it but I was concerned, not only for the financial aspect, but also I wasn’t sure if I could make the 10-hour drive this year. I didn’t want to say no. He works so hard and does so much for me. Thus, came his idea. Out of the blue he said that he wants my help in selling all his McFarlane action figures on eBay and that’s what we did.

We got incredible lucky with a German buyer who bought 5 really large boxes filled with K’s action figures, earning enough money to pay for the hotel in South Padre Island. We actually earned quite a bit of money! So, everything was looking good for our vacation plans. That is until K mentioned a little problem a week and a half before we were to leave.

K had noticed some floaters in his GOOD eye and he knew that he was suppose to call the Optometrist right away. They got him in the next morning. A few hours later, I got a phone call from K while he was in the doctor’s office, asking me if I had already taken my diuretic. *cue the drama music* Luckily, I was still in bed because it was only 10am. (Hey… I sleep in! Don’t hate me because I can! *wink*) He wanted me to get up *UGH*, get dressed and he was on the way home to pick me up because he needed eye surgery within a few hours. *Wait..what????*

I was freaking out. I was worried about K having to go through surgery again, having enough energy to be in the waiting room, having to run all the prescription pickups, taking care of K after surgery and then of course paying the copay bill of the surgery, the doctor and the anesthesiologist. What worried us the most was the amount of time K was going to have to take off work. Sick leave and vacation pay only covered most of it but it’s the few days that was unpaid that worried us.

We are NOT rich but we just sold a huge amount of K’s action figures and we had that money but that means we had to cancel our anniversary/my birthday vacation that I just reserved. That hurt… In fact, I cried.

But looking back at this whole situation, this whole thing felt like everything aligned just for this moment. Somebody up there was looking out for us. We’re not out of the woods yet but this shows us how well and how much of a team we are.

Not only K and I are a team but also K’s sister and my sisters too. My older sister came down and cooked 2 quiches and a huge pan of lasagna so that I didn’t have to cook. My sisters and mother kept texting me encouraging support to me, which helped a lot. I’ll try to blog more often. You can catch me on my Living on O2 for Life Facebook page or ChristineLovesDaisies Instagram if you have those apps.

So, this is why I’ve been mostly quiet. I don’t like posting things that seem negative or stressful but I wanted to let you know that we’re ok and alive. =o) Lots of love to you all! *hugs* FYI: if you start seeing a lot of floaters in your eyes, that could be from tears in or a detached retina. Get it checked out ASAP (within a few days!)

It’s blazin’ hot here…

Living On O2 for Life

For the past two weeks or so it’s in the upper 90s and in a few days the forecast is 105 degrees. What that means for me is: Stay indoors with the a/c cranked. Well, that’s what I would usually do but life has a way of creating drama. You know, the kind of drama like your “Check Engine Soon” light coming on when I least expected it. Then there’s the strawberry plants that stopped producing! What? I know… I was nearly devastated. haha! There’s more drama that happened but I don’t want to bore you. I want to tell you about the fun stuff!

K and I were fortunate enough to be able to visit with one of my cousins and her family while they were here with their church. There was a choir event that we went to and wow were the kid who sang good! We had a great time catching up. I hadn’t seen them in over 18 years.

You know from the last post that I’m slowly increasing my experience in yeast bread. Well… I experimented with making Honey Oatmeal Wheat rolls. Unfortunately, K doesn’t like wheat or oatmeal in his bread. Lesson learned! So, I shared them with his mother. See picture in the right column under Instagram. If you scroll down you’ll see them. It was a lot of fun! We also ate our first two ears of corn that K grew. Our experiment with growing corn has been successful thus far. We have 7 more ears left growing from a separate, later planted seeds. Whew.. they were delicious and I hope we plant more next year. I’m making quite the farmer out of my man. I’m SO proud!

Unfortunately, one of our pond goldfish kicked the bucket. He was floating belly up one day and we still don’t know why or what caused it. Rest in peace little man… But, we still have 7 left… so… HOORAY Goldfish! haha! My newest Need a Hug afghan is coming along nicely. I already have the recipient in mind to ship it to. I’m hoping to get it finished within a month. *fingers crossed*

This past week has been terribly hot and humid. It’s been trying to rain but in our area it’s only coming down in the lightest sprinkle occasionally which is making it HARD for me to breathe and tired a lot. I want to try to get that yummy Cinnamon Swirl Bread made today. K said, “Double to the cinnamon swirl!” So, if I’m not too tired, I’ll make it today and increase the swirl! haha! I’m going to share half of it with K’s mom. She really liked my first loaf. YAY!

Be well and be careful with this heat. *hugs*

Life: full of fun!

Living On Oxygen for Life

Happy Day After April Fools Day! I’ve never been into the whole “April Fools” thing since the time my little sister wrapped a raw egg in foil and put it in my bed while I slept. Yep, I rolled over onto it and the egg broke, leaked egg guts and made a mess in my bed. Yuck! So, April Fools? No thank you! haha!

K and I have been BUSY lately. My garden is growing like crazy! We have little tiny cherry tomatoes growing (3 of them…wow!) and my potato plants are getting huge. I even ate my first strawberry from the garden and it was DELICIOUS! So sweet! Yes, I shared it with K. I didn’t really want to because it was so good but there was only one berry and it would have been rude of me not to share. Right?

I’ve started crocheting again. I had stopped in October since K was having trouble with his eyes. Things got hectic with his Glaucoma and Detached retina problems. And I thought taking care of my own problems was hard. Add helping K with his medical stuff (no lifting heavy things for 2 weeks for each eye surgery), it was a little crazy around here. Here’s what I’m working on right now:

I’ve been a little inventive in the kitchen lately. I created a protein shake that can rival Starbucks’ mocha, caramel frappuccino. It is delicious and I want to try making a peanut butter, chocolate protein shake (without the bananas). Here’s the ingredients that I used:

Rivals Starbucks Frappuccino!

I told you I’ve been busy lately. In fact, K made one of my dreams come true. Yay K! My older sister dug up a pond liner (hard shell) from their yard when they moved into their house and gave it to us. Of course, K said no we can’t have a pond. So, many, many years I have been working on him about having a pond. Yes, we kept it THAT long. Out of the blue, he asked me a couple of weeks ago, what I thought about having a pond. Of course I was overjoyed, ecstatic even. Naturally I said YES! Picture me jumping up and and down cheering and then bending over out of breath saying… “Whew, I’m tired now. But, let’s do this!”

I have to let you know. I AM A PLANNER. I like researching things I want to do so I know what I’m doing once I start a project. K is the opposite. Kind of. So, it took us a couple of tries to stack the flagstone to make it look almost the way we want it. Let me tell you… those are so heavy! K did all the hard labor but I still wanted to help with some of the physical stuff. I tried moving the flagstone and after four stones, I was done. K told me to go sit down. I like being involved in our house projects. The way I was involved was helping pick out the type of stone, fish, and planning how the pond will look. K wanted to name the goldfish with Beatles names. Ugh! Really? I named one of the goldfish, Thunder! K named one of them White (not Whitey, he says)… So, I call him White Ghost because he’s an all white fish. Clever, I know! We have a total of 8 fish. 5 small goldfish and 3 medium goldfish. It was hard to get K to wait until the water was ready for fish.

Bamboos just added my dream pond.

I also have 9 flowers on my lemon tree! NINE!!!
Please don’t fall off… Please don’t fall off!
I even caught a sale at the grocery store for fresh green beans! Late last night, I washed and blanched them so that I could freeze them. They are so much better than green beans from a can. Blech! I only wish that I had bought 2 bags of them instead of one. Darn it!

Yes, life is good. I have things to look forward to every day. Feed my fish, check my garden, and pray for lemons to produce on my Meyer lemon tree. Hooray! All these things help keep me happy which distract me from bad breathing days which is awesome. I hope life is going well for all of you.

Life is amazing!

Living On Oxygen for Life

For most of us who have respiratory problems, the Winter months can be tough to get through. I try to stay home as much as possible so that I’m not exposed to people who are sick. I know… I wish they would stay home too. Because I stay home, I get cabin fever. Seeing it overcast outside and cold, really makes me feel blue.

By the time January rolls around, I’m getting excited because I know the next month I’ll be planting my garden beds. Hooray! So, I get out the graph paper and plot out where and in which bed I want my seeds. We also decide what our newest “experiment” crop (K likes to call them crops now. He’s slowing getting into being a farmer. *wink*) will be. This year I let K decide. He chose something that I have wanted to try since last year. Corn!! How exciting, right?!?

Now we don’t have a lot of “farming” space for corn. So we are only planting one row of 6 or 7 plants in the actual ground (not a raised bed). We also decided we need more strawberries and more of a variety of tomatoes. K got pretty handy and found our old window planter boxes for the strawberries and I had an idea to mount them on the side of the garden beds. Nifty!

2018 Spring Garden

I love getting creative! We have hanging baskets of cherry tomatoes too. Hopefully they will be successful. I don’t have a lot of energy to take care of all of this but K has really taken the lead on the watering the garden so that I can enjoy watching all the vegetables grow. There’s just something rewarding about watching & caring for the things you plant to grow into the vegetables you later eat. This excitement helps motivate me. The joy and motivation I get from my garden is the main reason K is onboard with helping me with it. He does what he can to keep me moving and exercising my lungs. Not to mention all the yummy vegetables we’ll get to eat!

So are you ready for some warm weather??? Lots of love to you all!!

With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!

The Beast Within… (repost)

Living On Oxygen for Life – a repost from 2016 because this is so important to read if you are dealing with anxiety and control issues.

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.

2017 A Year’s Review…

Living On O2 for Life

Life during 2017 sure has been interesting. K and I have found ourselves confronted with many challenges that mostly were unexpected, which usually is the case for us. However, there were a LOT of good, fun, adventurous times throughout the year for us too. Thank goodness… because we really needed them.

January 2017 started with a visit from BOTH of my sisters at the same time! It was shockingly fabulous because it’s difficult for the both of them to have the same time off with their work schedule and then they’d have to drive down to see me now. I don’t travel well anymore and they are starting to understand that a little better now. It’s one thing for them to know their sister’s health is declining but it’s another thing to actually see it first hand. January brought the gift that I’d been waiting for… Christmas cookies made by my older sister and frosted by me and my sister and decorated (little kid style) by my very adorable niece.

February 2017 brought all kinds of exciting fun planning of my vegetable garden. We tried growing new things this year, like broccoli, squash, and tomatoes. I tried to keep up with the garden but with my health and the Texas heat, it started to get me way too tired just trying to keep it watered. A couple of times, K would tell me to just go inside because he would see me struggling with my breathing. So, he took over the garden for me. He’s my hero!

If you haven’t ever grown your own vegetables, it’s a sight to see and it’s actually very therapeutic. No, really… I swear! In March, the potatoes and our two tomato plants were growing like crazy due to amount of rain we’d keep having! Yay!!

In March, K and I were shopping in Home Depot and my liquid oxygen tank flew out of the cart and landed on the cement. What a scene that was! K was so worried about me but I handled it amazingly well after I realized it still put out oxygen. Whew, right? By the end of March, I was harvesting my first strawberries! Yummy! In fact, K was so interested in my strawberries that he filled two hanging baskets with strawberry plants to grow some of his own. Wow. I’m slowly turning him into a farmer! haha!

In April, K’s Aunts and Uncles came down to visit but stayed with his mom and his aunt here in town. By May, I had a lot of tomatoes I didn’t know what to do with them. I mean, we could only eat so many slices of tomatoes on sandwiches and for salads. So, I looked up on Pinterest how to make homemade tomato sauce. The process was tedious and it felt like it took forever but it sure was a success. I even had to call my mom for advice.

I didn’t get to go to my niece’s recital or birthday party because I can’t drive myself that far alone anymore. It just wears me out being the driver for that long. In between the missed trip to my sister, to the time I got to go see them later in the year, K and I went to 2 concerts. We saw U2 and then we saw Roger Waters (think Pink Floyd). Those concerts were a gift from me to K for his birthday and Christmas of last year. We used my wheelchair and I a bought a cup holder that I could attach to the arm of my wheelchair from Amazon. It was SO handy.. so convenient and affordable! Yay.. we all love affordable, right? Going to the concerts with K reminded me of the old days of dating K. We had a good time dancing, singing and acting goofy back then as we did for these two concerts.

In August, my older sister road the train to my city and drove me in my van to her house. I stayed with her for 10 days and then she drove me home and caught the train home. How sweet was that??? I know, right? I have to admit that I missed K something fierce. After I got home and rested up, K and I went on an adventure to South Padre Island for our 25th anniversary. We hit every art gallery and tried various restaurants and did all kinds of fun things. It was a great 10 days but on the way home, the front grill of my van flew off and went over the top of the van. I’m just thankful that it wasn’t me driving because it sure was scary. We didn’t see where it landed and thankfully no one was behind us. I knew we should have taken Klondike, my rubber chicken (road trip mascot). We got an estimate to replace the grill but it was an outrageous price. K and I had an idea but we didn’t realize that we were both thinking the same thing until we started talking about Plan B. We’d the grill replacement part on Amazon, order it, and K thought he could put it on the van himself. So that’s what we did for so much less! I’m so impressed with K’s skills! Though, he’s not much of a car guy but he can fix simple things. My MacGyver, he was! *wink*

From October up to now has been rough, K has had a lot of trouble with his eyes that scared the ever-lovin’ bejeebers out of us. He’s had to have 2 surgeries and I needed to take care of him while he recovered. It reminded me of just how much he actually does for me with my health needs and all done willingly and without complaint. I’m so lucky. I have to mention that he’s got some great ophthalmologists. One of them has the most awesome waiting room filled with jigsaw puzzles that anyone can work on and even a blanket rack that has CROCHETED afghans! *shock* Wow! K said his doctor wanted to meet me. Apparently, K had been telling him about me and the doctor has a daughter with scoliosis like me. So, without giving names, I’d like to give a shoutout to her! “HEY! If you are reading this, here’s a big hello to you and hoping that you are doing well.” *hugs*

Christmas was great! I got to help K decorate the house with new creative ideas this year. We try to add new ideas every year to the decorations! This year we added 5 wreaths we decorated together, 3 hung in our family room windows and one for two large mirrors we have. I had to go at a really slow pace hanging Christmas bulbs, wrapping ribbon around trees, and creating my 3 wreath masterpieces but we got it all done in about 5 days. Hooray! And now it’s January 2018. We’re ready for a better year. *fingers crossed* We’re already planning some exciting things to look forward to which is how we stay optimistic during the tough times.

You can see the pictures I take if you look in the right column of this blog under the Instagram heading. You don’t need to have an account to see my pictures. I just didn’t add them to this post because it’s already so long.

A Long Awaited Update! September/October 2017

Living On Oxygen for Life

Let’s be honest… I’ve missed blogging and I know it’s been since before my birthday (last month) that I’ve posted anything on my blog for you to read. In my defense, the last two months have been incredibly… what’s the word I’m looking for?… trying?…no. Hectic? You could say that. Let’s throw in challenging with a bit of a MacGyver twist and super stressful at times. If you wrap all that up and include my two road trips that I took (one to Oklahoma to see my family & one to South Padre Island for my birthday/25th anniversary), I have to admit, it’s been a pretty awesome adventure.

It all started with my birthday/anniversary vacation that we try to take every year. We both took turns driving down to South Padre Island which took us about 9 hours even while having to stop nearing every two hours (when K was driving) to get out and stretch our legs and walk the dog. Rocco loved sniffing new territory but I hated having to use convenient store or McDonald’s bathrooms. Not just because I never knew what to expect going into one of those things but also because getting in and out of the car and walking to the bathroom now wears me out and makes me short of breath in the worst way. That’s something new.


We made it to Padre and it was overcast but that’s ok because we knew Hurricane Harvey just past by and almost everything was up and running again on the island. Yay for us! Two days after we arrived, a boat washed up on the beach which drew everyone, including the Padre Beach police, to check the boat out. We should have set up a beach chair next to it and charged people for us to take their picture! It took nearly a week for the boat to wash up this far on the beach.


K and I normally go for a nice steak dinner for our anniversary celebration. But who knew that there wasn’t a restaurant on the island, nor close by on the mainland, that sells a good steak? Instead, we had a small party of two at our condo with a gigantic birthday/anniversary cake that K intended to share with the waitstaff had we gone to a restaurant. Thankfully we brought our big ice chest and I had some square foil pans to save the leftover cake to freeze and take home. You better believe that I ate it all once I got home (K had the last piece..darn him!). I LOVE birthday cake!

We really had a lot of fun and took a few goofy pictures. I was even a pirate! Argh! After ten days in Padre, it was time to go home and on the way home, the craziness began. We were north of Austin, Texas when it happened. I was reading and K was driving… thankfully. Our grill from the front of our van broke loose and flew over the hood and smacked our windshield and then continued over the top of the van. It scared us so bad. Thankfully, no one was behind us and we looked but didn’t see it land on the highway. We get home ok and called our mechanic to see what it would cost to get it replaced. $600! Are you kidding me? The thing was made mostly of plastic. K and I had the same idea… look on eBay for the part. K said he could fix it himself and I was, like, “You go Rambo…you get into that MacGyver mode!” Sure enough, it cost us a total of $200 and K attached it with no problems! YAY K!

What K didn’t tell me was that on the way home from Padre was that he was starting to see floaters in his right eye. Then when he went to work, he called his optometrist and they told him to come in RIGHT NOW. He had a detached retina. I was so worried because now he had to have surgery and this was his eyesight!. The first time I went with K to his optometrist, K told me that he had been telling the doctor about me because he has a daughter who has some similar health conditions. Let me tell you that I have no problem that K talked about me. I mean, I blog… so of course I don’t mind. I was really excited about meeting this doctor to learn more if he wanted to talk about it. Naturally, I knew this appointment was about K but I did bring a printed copy of an x-ray showing my scoliosis. This doctor was really neat and very personable. K and I really like him. But what excited me the most was his waiting room. Holy cow… the moment I walked into the building, I was thinking that EVERY waiting room should be like this one. There were crocheted afghans on a blanket rack next to the door and in each waiting area there was a card table with a puzzle to be put together. I immediately zoned in on the puzzle. K knows. I love puzzles and there was an older man sitting there working on the one I noticed. I just blurted out … “Oh yay a puzzle!!!” (I know you’re visualizing that.. aren’t you? haha!) The man heard me and started to get up saying that I could work on it. I told him to please stay and I can work on it with you. I told him that I love puzzles and this reminds me of when I worked on puzzles with my dad. Awww! I know, right? I was so engrossed that I didn’t even hear K’s name called by the nurse. What’s so awesome was that there was ANOTHER puzzle in the waiting room in the back! I was in waiting-room heaven!

K’s surgery went well but I wore myself out having to drive him to appointments and waking up to check to see if he wasn’t sleeping on his back for the first week after surgery. That was stressful but after the first week, he could sleep on his side but NOT on his back. You would think that it wouldn’t be a big deal but people move around while they sleep and K is accustomed to sleeping on his back. So, I had a lot of waking up to do to check on him. With everything that was going on with K, I truly had an eye opening experience about how much he does for me without complaining. He drives me to doctor appointments that are an hour away, he pushes me in a wheelchair when I need it, he takes care of everything in the background when I have migraines, not to mention doing most of the chores and all of the grocery shopping now…and most of this is done without me having to ask. I got a taste of what he does for me when I needed to take care of him for a change. I was definitely humbled and I gained a new appreciation for what he does for me. Not that I never appreciated it but my health is changing faster now, requiring K to do more and I don’t always see what he does for me.

Lots of love to you all! Don’t forget to subscribe to my blog to follow along! Leave a comment too! Have a great day!!!

Happy September!!

Living On Oxygen for Life

Happy September everyone! I’m super excited! First because it’s September! Second because it’s almost my birthday. Third because it’s almost my 25th wedding anniversary! And fourth because, well, it’s almost Christmas!!! haha! Here in Texas the heat of the summer is starting to cool down. Unfortunately, a hurricane hit. It’s very sad. People are struggling to clean up the mess after realizing everything they owned is ruined or washed away. It’s most likely going to go down in the books as the worst hurricane disaster in the United States’ history. Hurricane Harvey dumped 25 trillion gallons of rain on Houston and the Southeast area of Texas. Please donate to Red Cross Organization if you can. God bless Texas.

I have been away from blogging for a bit (2 months!) and for that, I’m super sorry. I have been going through some health changes that needed some “lifestyle” adjustments (again)… which blows… However, I’m here now, ready to entertain you once again with my exciting life of living on oxygen. So, let’s begin! YAY!

Today, I went to my doctor appointment. As the nurse weighed me, she asked if I wanted to get my flu shot today. I was like, “What? You have them already???” [insert confused, surprised look on my face] I normally get my flu shot in October. Not that I find it superstitious to wait until October, but it’s always been my thing. Ok, maybe it’s a little superstitious. hehe! I could get it now but I don’t want to feel tired and achy around my birthday and 25th wedding anniversary. So, I’ll wait until next month. I never miss getting my flu shot. It really helps!

If you can get a flu shot, do it, but I know some people have negative reactions to them. Be extra diligent about washing hands after touching things in public.

As I was driving home from the doctor’s office, I was looking at the gas stations. They still have no gas in them. Some have diesel fuel left but not unleaded. A lot of people panicked and ran out to get their gas tanks topped off, filled up and some even filled a gas can the last few days. Now, no one has gas left. I’m sitting on just under a quarter of tank of gas. K’s car had a quarter tank left this morning but I’m not sure if he’ll have enough to get to work tomorrow. I hope gas comes soon. It’s starting to freak me out.

Crazy Awesome Weekend with Family!

Living On Oxygen for Life

I had a very long but fun weekend. First was the Pulmonary Hypertension doctor appointment and an Arterial Blood Gas drawn. Then we ate lunch at McDonald’s because we had other things we needed to do. We had to run to Walmart to return some stuff and pick up some forgotten thing from the grocery trip K did the previous day. Plus we picked up a new inhaler at the pharmacy. That was all on Friday.

When we came home from the errands, we got busy finishing up with cleaning the house because family was coming!!!! Yay!

After I made it to bed feeling exhausted, I knew I had to get up way early again for another appointment on Saturday that was a little over an hours drive away.

While we were at the appointment, my sister & her family already arrived at our house (we call it The Chateau), and we finally got home around 2pm. Yay! 

We got to babysit my niece for 4 hours, which was super fun but by the time they got back, K and I were wiped out.  My niece must have some sort of super-charged mega-battery that keeps her pumped up with energy.  I asked to borrow it but I didn’t think it’s transferable. Darn! 

We had so much fun but I’m glad we didn’t go to lunch with them today. It’s time for this girl to crash. I need sleep or at least down time. My niece is 7 and she asked me lots of questions (even taught me a two person hand-slapping song that was called Lemonade. I think?!) about my bipap mask that I was using when she snuck in my room to see if I was awake yet yesterday during my very short nap. She wanted her own cannula. She also wanted to see what it felt like with it connected to the oxygen. 

So, like a fun Auntie that I am, I used it as a learning experience for her. I got her a 7 foot cannula (like the ones used with portable tanks), connected it to one of my oxygen tanks, and I turned the oxygen on to 2 liters first. She wasn’t really impressed. So I told her, “Ok, now this is was it feels like at the amount that I have to use which 6 liters.” Her eyes got really wide when she felt it in her nose and she said, “Whoa! How do you do that?” “Baby girl, I do it because it helps me breathe.” 

I always want to make sure that she knows it’s ok to ask questions about me or my equipment. Curiosity can be a good thing when paired with learning about something that will expand her mind. We had a great time this weekend and I feel happy as I always do when I get to see one or both of my sisters. It’s like medicine to my soul. Sounds a little corny but it works for me. 

I’m famous!!! *wink*

Living On Oxygen for Life

Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.

I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):

My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.

Please support this effort by going to this website: “Donate now to support pulmonary hypertension research. Engage for a cure with phaware.” You could even get an “I’m Aware That I’m Rare” t-shirt to spread awareness when you donate. I highly encourage you to check it out.

After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.

Love y’all! *hugs*

A little thing about shopping carts.

Living On Oxygen for Life

A tragic accident happened yesterday. *sniff* *gulp* I was hot-footing after K in Lowe’s last night, reminding him to please slow down. You see, even after all this time together with each other, he will sometimes forget that I’m slower than he is. “What?!?” You ask. I know, I know. I’m stunned by that revelation myself but it’s true.

K “needed” more garden supplies. I swear for a man who originally didn’t want a yard when we were house shopping years ago, he sure has taken up gardening as if it’s a lifeline. Honestly, it can be and has been. Even though it’s a lot of work, there’s a lot of joy and even a bit of escapism to it. He’s made our yard it our little project that is never finished and that’s ok because we love every change we bring to it each year.

Now, back to Lowe’s. Right. Where was I? Ok I remember. “Slow down,” and he turns around to look back at me while turning the cart filled with bags of dirt. “K, I’m not made for this speed anymore.” I smiled at him and that’s when my life goes into slow motion. I see K about to say something and then I caught something flying out of the corner of my eye.

Have you ever experienced something happening that you knew wasn’t right but you weren’t in the position to stop it from happening? Well, that was K and I. I was too far away and K was still looking at me when the dirt shifted in the cart that he was still pushing around a corner. There wasn’t a darn thing we could do. My portable liquid oxygen tank got squeezed out of the cart’s seat and flew out and smacked the concrete floor. The plastic casing came wide open and top was tilted out way wrong. Oh crude buckets! I gently picked it up, trying to squeeze it back together, when my mind was wondering if these things blowup. Apparently not this time. However, K’s first thought was, “Is it still flowing oxygen?” Isn’t he so sweet???

Miraculously, the darn thing was still working but I asked him what her would do if it didn’t. He said, “We’d figure it out. We always do.” What a guy, right? It wasn’t until we got back to home that we tossed around some ideas of what to do in that scenario. It’s always good to have a plan in place for such things because I can not be without oxygen for very long before I start to suffer badly and that’s if I’m just sitting somewhere without talking or moving to conserve my body’s oxygen supply.

When we got home we discussed what we could have done if my portable had stopped working. I’m a little nervous to tell my oxygen provider that my portable is broken. But hey, these things happen, right? A lesson has been learned here for us. We will never forget to strap in my portable tank using the child safety belt in the shopping cart. I mean, we took the time to connect it through my purse strap but didn’t do it this time for my portable.

Staying Active…

Living On Oxygen for Life

I AM SO EXCITED!!! K built me a second raised garden bed so that I can plant even MORE vegetables this year. He knows that my energy is waning but he is wanting me to keep active so that my lung function stays stable. Plus, staying active makes me happy even though it takes a lot more energy. So, this year, K has committed to helping me with my garden whereas, last year, he told me it would be my responsibility to take care of it.

Here’s some of my gardens:

I planted 8 seed potatoes this year.

Carrots, Broccoli, & Herb garden.

I know what he’s doing and I appreciate it very much. He’s getting more involved in hopes that I will be encouraged to keep moving which has declined over the last 6 months. In fact, we even went out clothes shopping for me last week. I normally hate shopping but I hadn’t had any substantial new clothes in years. I’m someone who will wear what I own for years before I become willing to shop for new stuff. Shopping makes me tired and again, K was so instrumental in helping me make shopping for clothes really fun. He helped me pick out clothes (because he’s SO good at! haha!), came in the dressing room and helped me get clothes on and off if I needed it, went out for exchanges for different sizes, told me to rest when he saw I was getting tired, AND told me, as I was showing off each piece of clothing, how much he liked it or asked me if I liked it or will I be comfortable in it. You see, I have scoliosis and clothes don’t always fit right. It can discourage me a lot when I go out clothes shopping. So having K there in the dressing room giving his opinion was SO helpful. He’s never gone into the dressing room with me before. So, yeah, he’s noticing and really trying to make a difference in my life and our happiness.

Today, I have February’s Need a Hug afghan being mailed out to a sweet lady, Linda. I’m still working on March’s afghan. It’s about half done. I hope I can finish it by the end of this month. I hope everyone is doing well. Much love to you all! *HUGS*

P.S. I just told K that I need a new Rubber Chicken. *sniff* Klondike’s (my current chicken) finally broke his neck *cringe*. It’s so sad because he’s been on some amazing adventures! When I get a new one, I will need help with naming him (or her). I’ve never had a girl rubber chicken before! Yes, I know I’m a bit strange about these chickens but they are our Road Trip Mascots. They go on our vacations with us for good luck. *sigh* So far, over the last 29 years, we’ve had Poke, Poke Jr., Mr. Chicken, & Klondike as our mascots. It really is a fun thing to do. haha! Like I’ve always said, finding something fun to distract me from my health, no matter how silly it can seem, is how I deal with life.

Well…. this is something new..

Living On Oxygen for Life 

This morning was all planned. I was going to wake up “casually early,” meaning around 9:30am instead of 10 or 11am and head off to get my labwork done for the month. You see, I still have to get monthly lab work to check my liver function because I take a Pulmonary Hypertension medication called Tracleer. However, for the past week, K has been off work due to cataract surgery in one of his eyes. He can’t lift anything over 20lbs for a week. Therefore, he can’t safely perform his job. He’s about to have his other eye worked on in a few days. 

Anyway, he’s been home and sees that I’m nearly awake when he recalls a VERY important factor about this month’s lab work changes that we were told by my PH doctor earlier this month. She wants me to have my cortisol level checked. I forgot all about that which is why it’s vital that betwixt the two of us, it’s handy that K has a memory like an elephant. Believe you me. I do not have a memory worth much at all. Even if I write things down, I’ll forget about it and then forget where I put my note once I actually remember that I wrote it down. 

So, I was scrambling out of bed, hot footing into the bathroom grabbing any color-coordinated clothing to wear on the way to take a speedy shower. K said I was suppose to go early in the morning. I’m freaking out because I didn’t want to delay my liver labs. I was running low of Tracleer and I can’t get those pills refilled until the liver lab results come back to the doctor. Thankfully, they usually get them the next day. But, I didn’t know how early I was suppose to show up for a cortisol lab. The doctor only said early AM which to me, that could be any various time in the morning. By the time I was out of the shower, dressed & ready go… K suggested that I call the lab first to get their interpretation of early AM for this new test. It was already 10:30am quickly approaching 11am (which happens to be my “I’m officially awake time. Let the day begin.”

So, I pick up the phone and call. I’m so glad I did. Before 9am, they said for cortisol labs. I hung up with a polite, “Thank you!” and then cringed. This is going to be hard. I’m going to have to drag myself out of the house early! It’s not even going to be for a doctor appointment…THAT, I would understand. But just for labs. Ugh! haha! I’m going to have to think of a good reward for tomorrow morning. Any suggestions?

I know I’ve seemed absent lately on my blog. I do respond to email, Facebook posts, comments of my blog here. I’m not gone at all. In between all of this, I am crocheting the Need a Hug afghans, which I have one to send out. Plus, K finished my second raised garden bed that I planted 8 seed potatoes in (so excited!) which leaves me with my other 2’x6′ bed & my 3’x4′ bed to plant vegetables in. I did plant 2 tomato plants already. As soon I finish planting my seeds, K will help me cover them with netting. The netting really helped last year to keep bugs (and stray cats) away. 

I truly hope y’all are doing well. Let me know how you are doing. *Huge Hugs* to all of my readers & visitors.